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3. Psychometrics of patient-reported outcomes measurement information system in von Willebrand disease, inherited platelet function disorders, and rare bleeding disorders

Author

Peters, Marjolein, Coppens, Michiel, Kruip, Marieke J.H.A., van Vulpen, Lize F.D., van Gastel, Tessa C.M., van Hoorn, Evelien S., Willems, Sterre P.E., Al Arashi, Wala, de Moor, Annick S., van Kwawegen, Calvin B., Teela, Lorynn, Oude Voshaar, Martijn A.H., Kremer Hovinga, Idske C.L., Schutgens, Roger E.G., Schols, Saskia E.M., Leebeek, Frank W.G., Haverman, Lotte, Cnossen, Marjon H., Gouw, Samantha C., and Lingsma, Hester F.

Published
2024
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7. Colorectal cancer screening in patients with inherited bleeding disorders: high cancer detection rate in hemophilia patients

Author

Kempers, Eva K., van Kwawegen, Calvin B., de Meris, Joke, Spaander, Manon C.W., Schols, Saskia E.M., Ypma, Paula F., Heubel-Moenen, Floor C.J.I., van Vulpen, Lize F.D., Coppens, Michiel, van der Bom, Johanna G., Fijnvandraat, Karin, Meijer, Karina, Eikenboom, Jeroen, Gouw, Samantha C., Leebeek, Frank W.G., and Kruip, Marieke J.H.A.

Published
2023
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12. Hepatitis C virus in hemophilia: Health‐related quality of life after successful treatment in the sixth Hemophilia in the Netherlands study

Author

Isfordink, Cas J., Gouw, Samantha C., van Balen, Erna C., Hassan, Shermarke, Beckers, Erik A.M., van der Bom, Johanna G., Coppens, Michiel, Eikenboom, Jeroen, Fischer, Kathelijn, Hooimeijer, Louise, Leebeek, Frank W.G., Rosendaal, Frits R., Schols, Saskia E.M., Smit, Cees, van Vulpen, Lize F.D., and Mauser‐Bunschoten, Eveline P.

Published
2021
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13. Mortality, life expectancy, and causes of death of persons with hemophilia in the Netherlands 2001–2018

Author

Hassan, Shermarke, Monahan, Rory C., Mauser‐Bunschoten, Evelien P., van Vulpen, Lize F.D., Eikenboom, Jeroen, Beckers, Erik A.M., Hooimeijer, Louise, Ypma, Paula F., Nieuwenhuizen, Laurens, Coppens, Michiel, Schols, Saskia E.M., Leebeek, Frank W.G., Smit, Cees, Driessens, Mariëtte H., le Cessie, Saskia, van Balen, Erna C., Rosendaal, Frits R., van der Bom, Johanna G., and Gouw, Samantha C.

Published
2021
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14. Efficacy of a 1:1 ratio VWF/FVIII concentrate in patients with von Willebrand disease.

Author

Kuppens, Geoffrey Z. L., Fischer, Kathelijn, van Galen, Karin P. M., van Beers, Eduard J., Van der Valk, Paul R., Kremer Hovinga, Idske C. L., van Vulpen, Lize F. D., and Schutgens, Roger E. G.

Subjects
VON Willebrand disease, BLOOD coagulation disorders, VON Willebrand factor, BLOOD coagulation factor VIII, BLOOD coagulation factors
Abstract

Introduction: Patients with von Willebrand disease (VWD) require administration of von Willebrand factor (VWF) concentrates peri‐operatively. Concerns about FVIII accumulation after repetitive injections of a 1:1 ratio VWF/FVIII clotting factor concentrate (CFC) led this study to explore the recovery and FVIII accumulation over time. Methods: This monocentre study examined patients with VWD receiving perioperative 1:1 ratio CFC infusions. CFC dosing was based on body weight and endogenous VWF/FVIII activity. FVIII and VWF activity was monitored at T0 (baseline), T1 (15 min postinfusion), and trough levels at T2‐T6 (24‐120 h). Results: We included 125 patients, undergoing 125 procedures (63 major surgeries, 62 minor), with a median of two CFC infusions (IQR 1–3). With a mean administered dose of 35.7 IU/kg CFC, recovery rates of FVIII and VWF were 2.6 IU/dL per IU/kg and 2.4 IU/dL per IU/kg, respectively. Mean FVIII levels at T0 were 62 (SD 51.9), T1: 164 (SD 80.4), T2: 155 (SD 62.8), T3: 162 (SD 59.8), T4: 124 (SD 78.4), and T5: 120 (SD 65.3) IU/dL. Mean VWF activity levels at T0 were 29 (SD 25.0), T1: 133 (SD 43.7), T2: 92 (SD 37.2), and T3: 86 (SD 37.5) IU/dL. Subgroup analysis in 47 patients with more than three infusions, showed no accumulation of mean FVIII levels. Conclusion: This perioperative study demonstrated excellent FVIII and VWF recovery of a 1:1 ratio VWF product in patients with VWD. Stable FVIII and VWF activity levels were observed after repeated infusions, without accumulation. Most major surgeries required only three CFC infusions. [ABSTRACT FROM AUTHOR]

Published
2024
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15. A clinical practice guideline for primary care physiotherapy in patients with haemophilia.

Author

Blokzijl, Johan, Pisters, Martijn F., Aspdahl, Magnus, de Boer, Wypke, Dybvik Matlary, Ruth Elise, Douma‐van Riet, Danielle, de Kleijn, Piet, Lobet, Sébastien, Loughnane, Paula, McLaughlin, Paul, Bladen, Melanie, Roche, Sheila, Stephensen, David, van Vlimmeren, Leo, van Vulpen, Lize F. D., and Timmer, Merel A.

Subjects
HEMOPHILIACS, HEMOPHILIA treatment, PHYSICAL therapy, PHYSICAL therapists, PRIMARY care
Abstract

Introduction: As a result of centralisation of haemophilia care to a limited number of intramural settings, many persons with haemophilia have to travel long distances to attend their haemophilia specialised treatment centre. However, regular physiotherapy treatment can be provided by primary care physiotherapists in the personʼs own region. Due to the rarity of the disease most primary care physiotherapists have limited experience with this population. This study aims to provide a clinical practice guideline for primary care physiotherapists working with persons with bleeding disorders. Method: A list of the most urgent key‐questions was derived from a previous study. Literature was summarised using the grading of recommendations assessment, development, and evaluation (GRADE) evidence‐to‐decision framework. Recommendations were drafted based on four 90 min consensus meetings with expert physiotherapists. Recommendations were finalised after feedback and >80% consensus of all stakeholders (including PWH, physiotherapists, haematologists and the corresponding societies). Results: A list of 82 recommendations was formulated to support primary care physiotherapists when treating a person with a bleeding disorder. These recommendations could be divided into 13 categories: two including recommendations on organisation of care, six on therapy for adult patients with bleeding disorders and five on therapy adaptations for paediatric care. Therapy recommendations included treatment after a joint‐ or muscle bleed, haemophilic arthropathy, chronic synovitis, non‐haemophilia related conditions and orthopaedic surgery. Conclusion: An evidence‐based practice guideline, based on current evidence from literature and clinical expertise, has been developed for primary care physiotherapists treating a person with haemophilia. To improve care, the recommendations should be implemented in daily practice. [ABSTRACT FROM AUTHOR]

Published
2024
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17. The spectrum of neutralizing and non-neutralizing anti-FVIII antibodies in a nationwide cohort of 788 persons with hemophilia A

Author

Oomen, Ilja, primary, Verhagen, Marieke, additional, Miranda, Mariarosaria, additional, Allacher, Peter, additional, Beckers, Erik A. M., additional, Blijlevens, Nicole M. A., additional, Bom, Johanna G. van der, additional, Coppens, Michiel, additional, Driessens, Mariëtte, additional, Eikenboom, Jeroen C. J., additional, Fijnvandraat, Karin, additional, Hassan, Shermarke, additional, van Heerde, Waander L., additional, Hooimeijer, H. Louise, additional, Jansen, Joop H., additional, Kaijen, Paul, additional, Leebeek, Frank W. G., additional, Meijer, Daniëlle, additional, Paul, Helmut, additional, Rijpma, Sanna R., additional, Rosendaal, Frits R., additional, Smit, Cees, additional, van Vulpen, Lize F. D., additional, Voorberg, Jan, additional, Schols, Saskia E. M., additional, and Gouw, Samantha C., additional

Published
2024
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19. Towards Personalized Treatment in Haemophilia: The Role of Genetic Factors in Iron and Heme Control to Identify Patients at Risk for Haemophilic Arthropathy

Author

Poli Van Creveldkliniek Medisch, MS Reumatologie/Immunologie/Infectie, Infection & Immunity, Regenerative Medicine and Stem Cells, MS Radiologie, Child Health, Circulatory Health, van Vulpen, Lize F D, Mastbergen, Simon C, Foppen, Wouter, Fischer, Kathelijn, Lafeber, Floris P J G, Schutgens, Roger E G, Poli Van Creveldkliniek Medisch, MS Reumatologie/Immunologie/Infectie, Infection & Immunity, Regenerative Medicine and Stem Cells, MS Radiologie, Child Health, Circulatory Health, van Vulpen, Lize F D, Mastbergen, Simon C, Foppen, Wouter, Fischer, Kathelijn, Lafeber, Floris P J G, and Schutgens, Roger E G

Published
2024

20. Navigating the challenges: a case report on managing a complicated postpartum course in type 3 von Willebrand disease with alloantibodies

Author

Poli Van Creveldkliniek Medisch, Child Health, MS Verloskunde, Circulatory Health, Infection & Immunity, Regenerative Medicine and Stem Cells, van der Zwet, Konrad, van Galen, Karin P M, Evers, Annemiek C C, Fischer, Kathelijn, Schutgens, Roger E G, van Vulpen, Lize F D, Poli Van Creveldkliniek Medisch, Child Health, MS Verloskunde, Circulatory Health, Infection & Immunity, Regenerative Medicine and Stem Cells, van der Zwet, Konrad, van Galen, Karin P M, Evers, Annemiek C C, Fischer, Kathelijn, Schutgens, Roger E G, and van Vulpen, Lize F D

Published
2024

21. Unravelling Facets of MECOM-Associated Syndrome: Somatic Genetic Rescue, Clonal Hematopoiesis and Phenotype Expansion

Author

Poli Van Creveldkliniek Medisch, Regenerative Medicine and Stem Cells, Cancer, Genetica Sectie Genoomdiagnostiek, Genetica Klinische Genetica, Child Health, Genetica, Venugopal, Parvathy, Arts, Peer, Fox, Lucy Claire, Simons, Annet, Hiwase, Devendra K, Bardy, Peter G, Narcis, Annette, Ross, David M, van Vulpen, Lize F D, Buijs, Arjan, Bolton, Kelly L, Getta, Bartlomiej, Furlong, Eliska, Carter, Tina, Krapels, Ingrid, Hoeks, Marlijn P A, Al Kindy, Adila, Al Kindy, Farah, de Munnik, Sonja, Evans, Pamela, Frank, Mahalia S B, Bournazos, Adam, Cooper, Sandra T, Ha, Thuong Thi, Jackson, Matilda R, Arriola-Martinez, Luis Alberto, Phillips, Kerry, Brennan, Yvonne, Bakshi, Madhura, Ambler, Karen, Gao, Song, Kassahn, Karin S, Kenyon, Rosalie, Hung, Kevin, Babic, Milena, McGovern, Alan, Rawlings, Lesley, Valkulin, Cassandra, Dejong, Lucas, Fathi, Rema, McRae, Simon, Myles, Nicholas, Ladon, Dariusz, Jongmans, Marjolijn C, Kuiper, Roland P, Poplawski, Nicola, Barbaro, Pasquale M, Blombery, Piers, Brown, Anna L, Hahn, Christopher N, Scott, Hamish S, Poli Van Creveldkliniek Medisch, Regenerative Medicine and Stem Cells, Cancer, Genetica Sectie Genoomdiagnostiek, Genetica Klinische Genetica, Child Health, Genetica, Venugopal, Parvathy, Arts, Peer, Fox, Lucy Claire, Simons, Annet, Hiwase, Devendra K, Bardy, Peter G, Narcis, Annette, Ross, David M, van Vulpen, Lize F D, Buijs, Arjan, Bolton, Kelly L, Getta, Bartlomiej, Furlong, Eliska, Carter, Tina, Krapels, Ingrid, Hoeks, Marlijn P A, Al Kindy, Adila, Al Kindy, Farah, de Munnik, Sonja, Evans, Pamela, Frank, Mahalia S B, Bournazos, Adam, Cooper, Sandra T, Ha, Thuong Thi, Jackson, Matilda R, Arriola-Martinez, Luis Alberto, Phillips, Kerry, Brennan, Yvonne, Bakshi, Madhura, Ambler, Karen, Gao, Song, Kassahn, Karin S, Kenyon, Rosalie, Hung, Kevin, Babic, Milena, McGovern, Alan, Rawlings, Lesley, Valkulin, Cassandra, Dejong, Lucas, Fathi, Rema, McRae, Simon, Myles, Nicholas, Ladon, Dariusz, Jongmans, Marjolijn C, Kuiper, Roland P, Poplawski, Nicola, Barbaro, Pasquale M, Blombery, Piers, Brown, Anna L, Hahn, Christopher N, and Scott, Hamish S

Published
2024

22. The spectrum of neutralizing and non-neutralizing anti-FVIII antibodies in a nationwide cohort of 788 persons with hemophilia A

Author

Poli Van Creveldkliniek Medisch, Regenerative Medicine and Stem Cells, Oomen, Ilja, Verhagen, Marieke, Miranda, Mariarosaria, Allacher, Peter, Beckers, Erik A M, Blijlevens, Nicole M A, van der Bom, Johanna G, Coppens, Michiel, Driessens, Mariëtte, Eikenboom, Jeroen C J, Fijnvandraat, Karin, Hassan, Shermarke, van Heerde, Waander L, Hooimeijer, H Louise, Jansen, Joop H, Kaijen, Paul, Leebeek, Frank W G, Meijer, Daniëlle, Paul, Helmut, Rijpma, Sanna R, Rosendaal, Frits R, Smit, Cees, van Vulpen, Lize F D, Voorberg, Jan, Schols, Saskia E M, Gouw, Samantha C, Poli Van Creveldkliniek Medisch, Regenerative Medicine and Stem Cells, Oomen, Ilja, Verhagen, Marieke, Miranda, Mariarosaria, Allacher, Peter, Beckers, Erik A M, Blijlevens, Nicole M A, van der Bom, Johanna G, Coppens, Michiel, Driessens, Mariëtte, Eikenboom, Jeroen C J, Fijnvandraat, Karin, Hassan, Shermarke, van Heerde, Waander L, Hooimeijer, H Louise, Jansen, Joop H, Kaijen, Paul, Leebeek, Frank W G, Meijer, Daniëlle, Paul, Helmut, Rijpma, Sanna R, Rosendaal, Frits R, Smit, Cees, van Vulpen, Lize F D, Voorberg, Jan, Schols, Saskia E M, and Gouw, Samantha C

Published
2024

23. Letter in response to Bounaix et al. “Management of anticoagulation and factor XIII replacement in a patient with severe factor XIII deficiency and recurrent venous thromboembolic disease: case report and review of literature”

Author

Poli Van Creveldkliniek Medisch, Regenerative Medicine and Stem Cells, Child Health, Circulatory Health, Infection & Immunity, van Vulpen, Lize F.D., Croles, F. Nanne, Schutgens, Roger E.G., Poli Van Creveldkliniek Medisch, Regenerative Medicine and Stem Cells, Child Health, Circulatory Health, Infection & Immunity, van Vulpen, Lize F.D., Croles, F. Nanne, and Schutgens, Roger E.G.

Published
2024

24. Patients with moderate hemophilia A and B with a severe bleeding phenotype have an increased burden of disease

Author

Poli Van Creveldkliniek Medisch, Verhagen, Marieke J A, van Balen, Erna C, Blijlevens, Nicole M A, Coppens, Michiel, van Heerde, Waander L, Leebeek, Frank W G, Rijpma, Sanna R, van Vulpen, Lize F D, Gouw, Samantha C, Schols, Saskia E M, Poli Van Creveldkliniek Medisch, Verhagen, Marieke J A, van Balen, Erna C, Blijlevens, Nicole M A, Coppens, Michiel, van Heerde, Waander L, Leebeek, Frank W G, Rijpma, Sanna R, van Vulpen, Lize F D, Gouw, Samantha C, and Schols, Saskia E M

Published
2024

25. The spectrum of neutralizing and non-neutralizing anti-FVIII antibodies in a nationwide cohort of 788 persons with hemophilia A

Author

Oomen, Ilja, Verhagen, Marieke, Miranda, Mariarosaria, Allacher, Peter, Beckers, Erik A.M., Blijlevens, Nicole M.A., Bom, Johanna G.van der, Coppens, Michiel, Driessens, Mariëtte, Eikenboom, Jeroen C.J., Fijnvandraat, Karin, Hassan, Shermarke, van Heerde, Waander L., Hooimeijer, H. Louise, Jansen, Joop H., Kaijen, Paul, Leebeek, Frank W.G., Meijer, Daniëlle, Paul, Helmut, Rijpma, Sanna R., Rosendaal, Frits R., Smit, Cees, van Vulpen, Lize F.D., Voorberg, Jan, Schols, Saskia E.M., Gouw, Samantha C., Oomen, Ilja, Verhagen, Marieke, Miranda, Mariarosaria, Allacher, Peter, Beckers, Erik A.M., Blijlevens, Nicole M.A., Bom, Johanna G.van der, Coppens, Michiel, Driessens, Mariëtte, Eikenboom, Jeroen C.J., Fijnvandraat, Karin, Hassan, Shermarke, van Heerde, Waander L., Hooimeijer, H. Louise, Jansen, Joop H., Kaijen, Paul, Leebeek, Frank W.G., Meijer, Daniëlle, Paul, Helmut, Rijpma, Sanna R., Rosendaal, Frits R., Smit, Cees, van Vulpen, Lize F.D., Voorberg, Jan, Schols, Saskia E.M., and Gouw, Samantha C.

Abstract

Objectives: Anti-factor VIII (FVIII) antibodies have been reported to exhibit both neutralizing and non-neutralizing characteristics. This is the first study investigating the full spectrum of FVIII-specific antibodies, including non-neutralizing antibodies, very-low titer inhibitors, and inhibitors, in a large nationwide population of persons with hemophilia A of all severities. Methods: All persons with hemophilia A (mild (FVIII > 5–40 IU/dL)/moderate [FVIII 1–5 IU/dL)/severe (FVIII < 1 IU/dL)] with an available plasma sample who participated in the sixth Hemophilia in the Netherlands study between 2018 and 2019 were included. The presence of anti-FVIII antibodies of the immunoglobulin A, M, and G isotypes and IgG subclasses, along with antibody titer levels, were assessed using direct-binding ELISAs. FVIII specificity was assessed using a competition-based ELISA approach. The inhibitor status was determined using the Nijmegen ultra-sensitive Bethesda assay (NusBA) and the Nijmegen Bethesda assay (NBA). Results: In total, 788 persons with hemophilia A (336 (42.6%) mild, 123 (15.6%) moderate, 329 (41.8%) severe hemophilia) were included. The median age was 45 years (IQR 24–60), and the majority (50.9%) had over 150 exposure days to FVIII concentrates. Within our population, 144 (18.3%) individuals had non-neutralizing FVIII-specific antibodies, 10 (1.3%) had very low-titer inhibitors (NusBA positive; NBA negative), and 13 (1.6%) had inhibitors (both NusBA and NBA positive). IgG1 was the most abundant FVIII-specific antibody subclass, and the highest titer levels were found for IgG4. In individuals without a reported history of inhibitor development, no clear differences were observed in antibody patterns between those who were minimally or highly exposed to FVIII concentrates. IgG4 subclass antibodies were only observed in persons with a reported history of FVIII inhibitor or in those with a currently

Published
2024

27. Limited value of testing for factor XIII and α2‐antiplasmin deficiency in patients with a bleeding disorder of unknown cause.

Author

Ariëns, Sander, Huisman, Albert, Hovinga, Idske C. L. Kremer, Urbanus, Rolf T., van Galen, Karin P. M., van Vulpen, Lize F. D., Fischer, Kathelijn, and Schutgens, Roger E. G.

Subjects
BLOOD testing, VON Willebrand disease, BLOOD coagulation factors, HEMORRHAGE, ABSOLUTE value
Abstract

Introduction: In patients with an increased bleeding tendency, extensive diagnostic blood testing is often performed. When results of tier 1 assays of primary haemostasis are normal, protocols recommend additional testing to rule out rare disorders including coagulation factor XIII (FXIII) and α2‐antiplasmin (α2AP) deficiency. Aim: To evaluate the added diagnostic value of FXIII and α2AP levels in patients with a bleeding disorder of unknown cause (BDUC). Methods: A retrospective monocentre cohort study between August 2011 and August 2023 was conducted. In all patients with bleeding tendencies and normal diagnostic tests for von Willebrand disease and platelet function, FXIII and α2AP were measured. Results: We included 158 consecutive patients; mean ISTH‐BAT scores were 8.2 (SD ± 3.7) in children, 6.2 (SD ± 2.1) in men and 10.6 (SD ± 3.3) in women. Median age was 37 (range 5–79) years, 88.6% of patients were female. Patients displayed median FXIII activity of 111% (IQR = 97–131) and median α2AP activity of 112% (IQR = 103–119). Three (1.9%) patients had FXIII levels < 50%, respectively 43%, 45% and 46%. Corresponding ISTH‐BAT scores were 7, 12 and 14. No α2AP levels < 60% was observed. No significant association was found between FXIII levels and ISTH‐BAT scores. Conclusion: In our cohort of BDUC patients, no clinical relevant FXIII deficiencies were detected; absolute values were well above the 30% cutoff considered adequate for normal haemostasis. No α2AP deficiencies were detected. These data suggest that in BDUC patients, measuring FXIII or AP activity is of limited value. [ABSTRACT FROM AUTHOR]

Published
2024
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29. Unraveling facets of MECOM-associated syndrome: somatic genetic rescue, clonal hematopoiesis, and phenotype expansion

Author

Venugopal, Parvathy, Arts, Peer, Fox, Lucy C., Simons, Annet, Hiwase, Devendra K., Bardy, Peter G., Swift, Annette, Ross, David M., van Vulpen, Lize F. D., Buijs, Arjan, Bolton, Kelly L., Getta, Bartlomiej, Furlong, Eliska, Carter, Tina, Krapels, Ingrid, Hoeks, Marlijn, Al Kindy, Adila, Al Kindy, Farah, de Munnik, Sonja, Evans, Pamela, Frank, Mahalia S. B., Bournazos, Adam M., Cooper, Sandra T., Ha, Thuong Thi, Jackson, Matilda R., Arriola-Martinez, Luis, Phillips, Kerry, Brennan, Yvonne, Bakshi, Madhura, Ambler, Karen, Gao, Song, Kassahn, Karin S., Kenyon, Rosalie, Hung, Kevin, Babic, Milena, McGovern, Alan, Rawlings, Lesley, Vakulin, Cassandra, Dejong, Lucas, Fathi, Rema, McRae, Simon, Myles, Nicholas, Ladon, Dariusz, Jongmans, Marjolijn, Kuiper, Roland P., Poplawski, Nicola K., Barbaro, Pasquale, Blombery, Piers, Brown, Anna L., Hahn, Christopher N., and Scott, Hamish S.

Published
2024
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31. Subclinical synovial proliferation in patients with severe haemophilia A: The value of ultrasound screening and biochemical markers

Author

van Bergen, Eline D. P., primary, van Leeuwen, Flora H. P., additional, Foppen, Wouter, additional, Timmer, Merel A., additional, Schutgens, Roger E. G., additional, Mastbergen, Simon C., additional, Lafeber, Floris P. J. G., additional, de Jong, Pim A., additional, Fischer, Kathelijn, additional, and van Vulpen, Lize F. D., additional

Published
2023
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32. Transition readiness among adolescents and young adults with haemophilia in the Netherlands: Nationwide questionnaire study

Author

Brands, Martijn R., primary, Janssen, Ebony A. M., additional, Cnossen, Marjon H., additional, Smit, Cees, additional, van Vulpen, Lize F. D., additional, van der Valk, Paul R., additional, Eikenboom, Jeroen, additional, Heubel‐Moenen, Floor C. J. I., additional, Hooimeijer, Louise, additional, Ypma, Paula, additional, Nieuwenhuizen, Laurens, additional, Coppens, Michiel, additional, Schols, Saskia E. M., additional, Laros‐van Gorkom, Britta A. P., additional, Leebeek, Frank W. G., additional, Driessens, Mariëtte H. E., additional, Rosendaal, Frits R., additional, van der Bom, Johanna G., additional, Fijnvandraat, Karin, additional, and Gouw, Samantha C., additional

Published
2023
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34. Towards Personalized Treatment in Haemophilia: The Role of Genetic Factors in Iron and Heme Control to Identify Patients at Risk for Haemophilic Arthropathy.

Author

van Vulpen, Lize F. D., Mastbergen, Simon C., Foppen, Wouter, Fischer, Kathelijn, Lafeber, Floris P. J. G., and Schutgens, Roger E. G.

Subjects
*BLOOD coagulation factor VIII, *HEMOPHILIA treatment, *JOINT diseases, *HEME, *HEMOPHILIACS, *IRON
Abstract

The treatment landscape for haemophilia is changing rapidly, creating opportunities for personalized treatment. As major morbidity is still caused by haemophilic arthropathy, understanding the factors affecting joint damage and joint damage progression might lead to more individualized treatment regimens. We investigated the association of HFE mutations or HMOX1 polymorphisms affecting iron/heme handling with radiographic joint damage in 252 haemophilia patients (severe and moderate). Although iron levels and transferrin saturation were significantly increased in the 95 patients with an HFE mutation, neither carrying this mutation nor the HMOX1 polymorphism was associated with radiographic joint damage, and the same was true after adjustment for well-known factors associated with arthropathy. In conclusion, this study does not support the hypothesis that HFE mutations or HMOX1 polymorphisms can be used to predict the development of haemophilic arthropathy. [ABSTRACT FROM AUTHOR]

Published
2024
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36. Clotting factor activity levels and bleeding risk in people with haemophilia playing sports

Author

Versloot, Olav, primary, Kemler, Ellen, additional, Blokzijl, Johan, additional, Timmer, Merel, additional, Schuuring, Marleen, additional, van Galen, Karin P. M., additional, Kremer Hovinga, Idske Cornelia L., additional, van der Valk, Paul R., additional, van Vulpen, Lize F. D., additional, Schutgens, Roger E. G., additional, van Koppenhagen, Casper F., additional, van der Net, Janjaap, additional, and Fischer, Kathelijn, additional

Published
2023
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37. Desmopressin in nonsevere hemophilia A:patient perspectives on use and efficacy

Author

Romano, Lorenzo G.R., van Vulpen, Lize F.D., den Exter, Paul L., Heubel-Moenen, Floor C.J.I., Hooijmeijer, Helene L., Coppens, Michiel, Fijnvandraat, Karin, Schols, Saskia E.M., Ypma, Paula F., Smit, Cees, Driessens, Mariëtte H.E., Rosendaal, Frits R., van der Bom, Johanna G., Gouw, Samantha C., Kruip, Marieke J.H.A., Romano, Lorenzo G.R., van Vulpen, Lize F.D., den Exter, Paul L., Heubel-Moenen, Floor C.J.I., Hooijmeijer, Helene L., Coppens, Michiel, Fijnvandraat, Karin, Schols, Saskia E.M., Ypma, Paula F., Smit, Cees, Driessens, Mariëtte H.E., Rosendaal, Frits R., van der Bom, Johanna G., Gouw, Samantha C., and Kruip, Marieke J.H.A.

Abstract

Background: Desmopressin increases plasma factor VIII and von Willebrand factor levels in persons with nonsevere hemophilia A. Patients’ perspectives on desmopressin are relevant to increase and optimize its suboptimal use. However, patients’ views on desmopressin are not reported. Objectives: To evaluate the perspectives of persons with nonsevere hemophilia A on desmopressin use, barriers for its use, side effects, and their knowledge about desmopressin's efficacy and side effects. Methods: Persons with nonsevere hemophilia A were included in a cross-sectional, national, multicenter study. Questionnaires were filled out by adult patients and children aged ≥12 years themselves. Caretakers filled out questionnaires for children aged <12 years. Results:In total, 706 persons with nonsevere hemophilia A were included (544 mild, 162 moderate, [age range, 0–88 years]). Of 508 patients, 234 (50%) patients reported previous desmopressin use. Desmopressin was considered as at least moderately effective in 171 of 187 (90%) patients. Intranasal administration was the modality of choice for 138 of 182 (76%) patients. Flushing was the most reported side effect in 54 of 206 (26%) adults and 7 of 22 (32%) children. The most frequently reported advantage and disadvantage were the convenience of intranasal, out-of-hospital administration by 56% (126/227) and side effects in 18% (41/227), respectively. Patients’ self-perceived knowledge was unsatisfactory or unknown in 28% (63/225). Conclusion:Overall, desmopressin was most often used intranasally and considered effective, with flushing as the most common side effect. The most mentioned advantage was the convenience of intranasal administration and disadvantage was side effects. More information and education on desmopressin could answer unmet needs in patients with current or future desmopressin treatment.

Published
2023

38. Transition readiness among adolescents and young adults with haemophilia in the Netherlands:Nationwide questionnaire study

Author

Brands, Martijn R., Janssen, Ebony A.M., Cnossen, Marjon H., Smit, Cees, van Vulpen, Lize F.D., van der Valk, Paul R., Eikenboom, Jeroen, Heubel-Moenen, Floor C.J.I., Hooimeijer, Louise, Ypma, Paula, Nieuwenhuizen, Laurens, Coppens, Michiel, Schols, Saskia E.M., Laros-van Gorkom, Britta A.P., Leebeek, Frank W.G., Driessens, Mariëtte H.E., Rosendaal, Frits R., van der Bom, Johanna G., Fijnvandraat, Karin, Gouw, Samantha C., Brands, Martijn R., Janssen, Ebony A.M., Cnossen, Marjon H., Smit, Cees, van Vulpen, Lize F.D., van der Valk, Paul R., Eikenboom, Jeroen, Heubel-Moenen, Floor C.J.I., Hooimeijer, Louise, Ypma, Paula, Nieuwenhuizen, Laurens, Coppens, Michiel, Schols, Saskia E.M., Laros-van Gorkom, Britta A.P., Leebeek, Frank W.G., Driessens, Mariëtte H.E., Rosendaal, Frits R., van der Bom, Johanna G., Fijnvandraat, Karin, and Gouw, Samantha C.

Abstract

Introduction: Care for adolescents with haemophilia is transferred from paediatric to adult care around the age of 18 years. Transition programs help to prepare adolescents for this transfer and prevent declining treatment adherence. Evaluating transition readiness may identify areas for improvement. Objective: Assess transition readiness among Dutch adolescents and young adults with haemophilia, determine factors associated with transition readiness, and identify areas of improvement in transition programs. Methods: All Dutch adolescents and young adults aged 12–25 years with haemophilia were invited to participate in a nationwide questionnaire study. Transition readiness was assessed using multiple-choice questions and was defined as being ready or almost ready for transition. Potential factors associated with transition readiness were investigated, including: socio-demographic and disease-related factors, treatment adherence, health-related quality of life, and self-efficacy. Results: Data of 45 adolescents and 84 young adults with haemophilia (47% with severe haemophilia) were analyzed. Transition readiness increased with age, from 39% in 12–14 year-olds to 63% in 15–17 year-olds. Nearly all post-transition young adults (92%, 77/84) reported they were ready for transition. Transition readiness was associated with treatment adherence, as median VERITAS-Pro treatment adherence scores were worse in patients who were not ready (17, IQR 9–29), compared to those ready for transition (11, IQR 9–16). Potential improvements were identified: getting better acquainted with the adult treatment team prior to transition and information on managing healthcare costs. Conclusions: Nearly all post-transition young adults reported they were ready for transition. Improvements were identified regarding team acquaintance and preparation for managing healthcare costs.

Published
2023

39. Colorectal cancer screening in patients with inherited bleeding disorders:high cancer detection rate in hemophilia patients

Author

Kempers, Eva K., van Kwawegen, Calvin B., de Meris, Joke, Spaander, Manon C.W., Schols, Saskia E.M., Ypma, Paula F., Heubel-Moenen, Floor C.J.I., van Vulpen, Lize F.D., Coppens, Michiel, van der Bom, Johanna G., Fijnvandraat, Karin, Meijer, Karina, Eikenboom, Jeroen, Gouw, Samantha C., Leebeek, Frank W.G., Kruip, Marieke J.H.A., Kempers, Eva K., van Kwawegen, Calvin B., de Meris, Joke, Spaander, Manon C.W., Schols, Saskia E.M., Ypma, Paula F., Heubel-Moenen, Floor C.J.I., van Vulpen, Lize F.D., Coppens, Michiel, van der Bom, Johanna G., Fijnvandraat, Karin, Meijer, Karina, Eikenboom, Jeroen, Gouw, Samantha C., Leebeek, Frank W.G., and Kruip, Marieke J.H.A.

Abstract

Background: The population-based colorectal cancer (CRC) screening program in individuals aged 55 to 75 years in the Netherlands uses fecal immunochemical testing (FIT), to detect hemoglobin in feces, followed by colonoscopy in individuals with a positive FIT. Objectives: The objectives of this study are to assess the false-positive rate, detection rate, and positive predictive value of FIT for CRC and advanced adenoma (AA) in patients with Von Willebrand disease (VWD) or hemophilia. Methods: We performed a multicenter, nationwide cross-sectional study embedded in 2 nationwide studies on VWD and hemophilia in the Netherlands. Results: In total, 493 patients with hemophilia (n = 329) or VWD (n = 164) were included, of whom 351 patients participated in the CRC screening program (71.2%). FIT positivity and false-positive rate in patients with hemophilia and VWD were significantly higher than those in the general population (14.8% vs. 4.3%, p <.001 and 10.3% vs. 2.3%, p <.001, respectively). In patients with hemophilia, the detection rate of CRC/AA was significantly higher than that in the general male population (4.5% vs. 1.8%, p =.02), and the positive predictive value of FIT for CRC/AA was comparable (32.3% vs. 39.7%, n.s.). In patients with VWD, the detection rate was similar to that of the general population (0.8% vs. 1.4%, n.s.), whereas the positive predictive value was significantly lower than that in the general population (6.3% vs. 36.8%, p =.02). Conclusion: This study indicates that despite a high false-positive rate of FIT in patients with inherited bleeding disorders, the detection rate of CRC and/or AA in hemophilia patients is high. FIT performs different in patients with hemophilia or VWD compared with the general population.

Published
2023

40. Pre-operative synovial hyperaemia in haemophilia patients undergoing total knee replacement and the effects of genicular artery embolization: A retrospective cohort study

Author

MS Radiologie, Brain, Circulatory Health, Researchgr. Systems Radiology, Cancer, Poli Van Creveldkliniek Medisch, MS Orthopaedie Algemeen, Infection & Immunity, Arts-assistenten Radiologie, Foppen, Wouter, van der Schaaf, Irene C, van Leeuwen, Flora H P, Verlind, David H, van Vulpen, Lize F D, Vogely, H Charles, Barentsz, Maarten W, MS Radiologie, Brain, Circulatory Health, Researchgr. Systems Radiology, Cancer, Poli Van Creveldkliniek Medisch, MS Orthopaedie Algemeen, Infection & Immunity, Arts-assistenten Radiologie, Foppen, Wouter, van der Schaaf, Irene C, van Leeuwen, Flora H P, Verlind, David H, van Vulpen, Lize F D, Vogely, H Charles, and Barentsz, Maarten W

Published
2023

41. Can motor proficiency testing predict sports injuries and sports-induced bleeds in people with haemophilia?

Author

Afdeling van Creveldkliniek - Zorg, Poli Van Creveldkliniek Medisch, Child Health, Circulatory Health, Kinderbewegingszorg patientenzorg, Infection & Immunity, Activity&Health sectie exercise, Versloot, Olav, Blokzijl, Johan, Timmer, Merel, Schuuring, Marleen, van Galen, Karin, Kremer Hovinga, Idske, van der Valk, Paul, van Vulpen, Lize, Schutgens, Roger, van Koppenhagen, Casper, van der Net, Janjaap, Fischer, Kathelijn, Afdeling van Creveldkliniek - Zorg, Poli Van Creveldkliniek Medisch, Child Health, Circulatory Health, Kinderbewegingszorg patientenzorg, Infection & Immunity, Activity&Health sectie exercise, Versloot, Olav, Blokzijl, Johan, Timmer, Merel, Schuuring, Marleen, van Galen, Karin, Kremer Hovinga, Idske, van der Valk, Paul, van Vulpen, Lize, Schutgens, Roger, van Koppenhagen, Casper, van der Net, Janjaap, and Fischer, Kathelijn

Published
2023

42. Clotting factor activity levels and bleeding risk in people with haemophilia playing sports

Author

Afdeling van Creveldkliniek - Zorg, Poli VCK, Poli Van Creveldkliniek Medisch, Child Health, Circulatory Health, Kinderbewegingszorg patientenzorg, Infection & Immunity, Activity&Health sectie exercise, Versloot, Olav, Kemler, Ellen, Blokzijl, Johan, Timmer, Merel, Schuuring, Marleen, van Galen, Karin P.M., Kremer Hovinga, Idske Cornelia L., van der Valk, Paul R., van Vulpen, Lize F.D., Schutgens, Roger E.G., van Koppenhagen, Casper F., van der Net, Janjaap, Fischer, Kathelijn, Afdeling van Creveldkliniek - Zorg, Poli VCK, Poli Van Creveldkliniek Medisch, Child Health, Circulatory Health, Kinderbewegingszorg patientenzorg, Infection & Immunity, Activity&Health sectie exercise, Versloot, Olav, Kemler, Ellen, Blokzijl, Johan, Timmer, Merel, Schuuring, Marleen, van Galen, Karin P.M., Kremer Hovinga, Idske Cornelia L., van der Valk, Paul R., van Vulpen, Lize F.D., Schutgens, Roger E.G., van Koppenhagen, Casper F., van der Net, Janjaap, and Fischer, Kathelijn

Published
2023

43. Desmopressin in nonsevere hemophilia A: patient perspectives on use and efficacy

Author

Poli Van Creveldkliniek Medisch, Romano, Lorenzo G R, van Vulpen, Lize F D, den Exter, Paul L, Heubel-Moenen, Floor C J I, Hooijmeijer, Helene L, Coppens, Michiel, Fijnvandraat, Karin, Schols, Saskia E M, Ypma, Paula F, Smit, Cees, Driessens, Mariëtte H E, Rosendaal, Frits R, van der Bom, Johanna G, Gouw, Samantha C, Kruip, Marieke J H A, Poli Van Creveldkliniek Medisch, Romano, Lorenzo G R, van Vulpen, Lize F D, den Exter, Paul L, Heubel-Moenen, Floor C J I, Hooijmeijer, Helene L, Coppens, Michiel, Fijnvandraat, Karin, Schols, Saskia E M, Ypma, Paula F, Smit, Cees, Driessens, Mariëtte H E, Rosendaal, Frits R, van der Bom, Johanna G, Gouw, Samantha C, and Kruip, Marieke J H A

Published
2023

44. Transition readiness among adolescents and young adults with haemophilia in the Netherlands: Nationwide questionnaire study

Author

Poli Van Creveldkliniek Medisch, Brands, Martijn R, Janssen, Ebony A M, Cnossen, Marjon H, Smit, Cees, van Vulpen, Lize F D, van der Valk, Paul R, Eikenboom, Jeroen, Heubel-Moenen, Floor C J I, Hooimeijer, Louise, Ypma, Paula, Nieuwenhuizen, Laurens, Coppens, Michiel, Schols, Saskia E M, Laros-van Gorkom, Britta A P, Leebeek, Frank W G, Driessens, Mariëtte H E, Rosendaal, Frits R, van der Bom, Johanna G, Fijnvandraat, Karin, Gouw, Samantha C, Poli Van Creveldkliniek Medisch, Brands, Martijn R, Janssen, Ebony A M, Cnossen, Marjon H, Smit, Cees, van Vulpen, Lize F D, van der Valk, Paul R, Eikenboom, Jeroen, Heubel-Moenen, Floor C J I, Hooimeijer, Louise, Ypma, Paula, Nieuwenhuizen, Laurens, Coppens, Michiel, Schols, Saskia E M, Laros-van Gorkom, Britta A P, Leebeek, Frank W G, Driessens, Mariëtte H E, Rosendaal, Frits R, van der Bom, Johanna G, Fijnvandraat, Karin, and Gouw, Samantha C

Published
2023

45. Subclinical synovial proliferation in patients with severe haemophilia A: The value of ultrasound screening and biochemical markers

Author

Poli Van Creveldkliniek Medisch, Researchgr. Systems Radiology, Cancer, MS Radiologie, Child Health, Circulatory Health, Infection & Immunity, MS Reumatologie/Immunologie/Infectie, Regenerative Medicine and Stem Cells, Lab Reumatologie/Klinische Immunologie, van Bergen, Eline D.P., van Leeuwen, Flora H.P., Foppen, Wouter, Timmer, Merel A., Schutgens, Roger E.G., Mastbergen, Simon C., Lafeber, Floris P.J.G., de Jong, Pim A., Fischer, Kathelijn, van Vulpen, Lize F.D., Poli Van Creveldkliniek Medisch, Researchgr. Systems Radiology, Cancer, MS Radiologie, Child Health, Circulatory Health, Infection & Immunity, MS Reumatologie/Immunologie/Infectie, Regenerative Medicine and Stem Cells, Lab Reumatologie/Klinische Immunologie, van Bergen, Eline D.P., van Leeuwen, Flora H.P., Foppen, Wouter, Timmer, Merel A., Schutgens, Roger E.G., Mastbergen, Simon C., Lafeber, Floris P.J.G., de Jong, Pim A., Fischer, Kathelijn, and van Vulpen, Lize F.D.

Published
2023

46. Structural changes after ankle joint distraction in haemophilic arthropathy: an explorative study investigating biochemical markers and 3D joint space width

Author

Poli Van Creveldkliniek Medisch, MS Reumatologie/Immunologie/Infectie, Infection & Immunity, Regenerative Medicine and Stem Cells, Lab Reumatologie/Klinische Immunologie, MS Radiologie, Child Health, Circulatory Health, Onderzoek Reumatologie, van Bergen, Eline D P, Mastbergen, Simon C, Lafeber, Floris P J G, Bay-Jensen, Anne-Christine, Madsen, Sofie F, Port, Helena, Foppen, Wouter, Schutgens, Roger E G, Jansen, Mylène P, van Vulpen, Lize F D, Poli Van Creveldkliniek Medisch, MS Reumatologie/Immunologie/Infectie, Infection & Immunity, Regenerative Medicine and Stem Cells, Lab Reumatologie/Klinische Immunologie, MS Radiologie, Child Health, Circulatory Health, Onderzoek Reumatologie, van Bergen, Eline D P, Mastbergen, Simon C, Lafeber, Floris P J G, Bay-Jensen, Anne-Christine, Madsen, Sofie F, Port, Helena, Foppen, Wouter, Schutgens, Roger E G, Jansen, Mylène P, and van Vulpen, Lize F D

Published
2023

47. Magnetic resonance imaging evidence for subclinical joint bleeding in a Dutch population of people with severe hemophilia on prophylaxis

Author

Cancer, Researchgr. Systems Radiology, Poli Van Creveldkliniek Medisch, Child Health, Circulatory Health, Infection & Immunity, Regenerative Medicine and Stem Cells, MS Radiologie, van Leeuwen, Flora H P, van Bergen, Eline D P, Timmer, Merel A, van Vulpen, Lize F D, Schutgens, Roger E G, de Jong, Pim A, Fischer, Kathelijn, Foppen, Wouter, Cancer, Researchgr. Systems Radiology, Poli Van Creveldkliniek Medisch, Child Health, Circulatory Health, Infection & Immunity, Regenerative Medicine and Stem Cells, MS Radiologie, van Leeuwen, Flora H P, van Bergen, Eline D P, Timmer, Merel A, van Vulpen, Lize F D, Schutgens, Roger E G, de Jong, Pim A, Fischer, Kathelijn, and Foppen, Wouter

Published
2023

48. Monitoring recovery of joints after bleeding: Physical examination and ultrasound are complementary

Author

Cancer, Researchgr. Systems Radiology, Poli Van Creveldkliniek Medisch, Child Health, Circulatory Health, MS Radiologie, van Leeuwen, Flora H P, Fischer, Kathelijn, Foppen, Wouter, van Vulpen, Lize F D, Timmer, Merel A, Cancer, Researchgr. Systems Radiology, Poli Van Creveldkliniek Medisch, Child Health, Circulatory Health, MS Radiologie, van Leeuwen, Flora H P, Fischer, Kathelijn, Foppen, Wouter, van Vulpen, Lize F D, and Timmer, Merel A

Published
2023

49. Colorectal cancer screening in patients with inherited bleeding disorders: high cancer detection rate in hemophilia patients

Author

Poli Van Creveldkliniek Medisch, Kempers, Eva K, van Kwawegen, Calvin B, de Meris, Joke, Spaander, Manon C W, Schols, Saskia E M, Ypma, Paula F, Heubel-Moenen, Floor C J I, van Vulpen, Lize F D, Coppens, Michiel, van der Bom, Johanna G, Fijnvandraat, Karin, Meijer, Karina, Eikenboom, Jeroen, Gouw, Samantha C, Leebeek, Frank W G, Kruip, Marieke J H A, Poli Van Creveldkliniek Medisch, Kempers, Eva K, van Kwawegen, Calvin B, de Meris, Joke, Spaander, Manon C W, Schols, Saskia E M, Ypma, Paula F, Heubel-Moenen, Floor C J I, van Vulpen, Lize F D, Coppens, Michiel, van der Bom, Johanna G, Fijnvandraat, Karin, Meijer, Karina, Eikenboom, Jeroen, Gouw, Samantha C, Leebeek, Frank W G, and Kruip, Marieke J H A

Published
2023

50. The detrimental effects of iron to the joint; aggravation by inflammation

Author

Poli Van Creveldkliniek Medisch, MS Hematologie, Lab Reumatologie/Klinische Immunologie, Infection & Immunity, Regenerative Medicine and Stem Cells, van Vulpen, Lize F D, van Bergen, Eline D P, Pulles, Astrid E, Mastbergen, Simon C, Poli Van Creveldkliniek Medisch, MS Hematologie, Lab Reumatologie/Klinische Immunologie, Infection & Immunity, Regenerative Medicine and Stem Cells, van Vulpen, Lize F D, van Bergen, Eline D P, Pulles, Astrid E, and Mastbergen, Simon C

Published
2023

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